Hi, last b12 blood test reading back in Dec was 174. Doctor said it wouldn't account for my numb toes. Saw a neurologist in Feb who diagnosed poly neuropathy. In March my fingertips began losing sensation. I read about possible links between both propranolol and omeprazole and neuropathy and stopped taking both. Persuaded my GP to give me a b12 loading dose. I felt a huge lift in mood and an improvement in the numbness. Last injection 29th March. Tried unsuccessfully to get further injections. I feel like a junkie trying to get a fix. I honestly believe heroin would be easier to come by than b12. Today depression has hit me like running into a wall. Is this normal? Is there any hope of recovering sensation after such a long time?

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

Thank-you Clivealive. I tried reasoning with my gp and he said no to injections but that he would write to my neurologist. I've booked to see the neurologist in hopes of speeding things up. Trouble is either he's a rotten neurologist because he's ruled out b12 deficiency or he's right and nothing can be done. Either way, I'm screwed (pardon the Vernacular)!

Not as far as I know. I just feel like such a drama queen. Maybe the only thing wrong with me is hypochondria. My husband is taking me to a private gp tomorrow in hopes we can get him to prescribe and thereby get some breathing space.

I had a reading of 150 B12 blood serum , and had numb feet and ankles .Had to go to Private GP to get diagnosis of PA .You most likely have got B12 deficiency from taking Omeprazole , which nullifies your stomach acid., which is desperately needed to absorb B12 , the most difficult vitamin to absorb . I could only get one injection every 3 months , as my doctor wouldn’t agree that my numb feet were a neurological symptom . So I had to take matters into my own hands and self - inject Hydroxocobalamin once a week . I’m glad to say that the numbness has gone, and I’m just left with burning feet , which doesn’t bother me too much . At least I can keep driving my car. So I can offer you some hope with your feet . But you will need plenty of injections , which are difficult to get . But if caught in time you could get rid of the numbness. Best of luck .

Thank-you Wedgewood, I think you're right about the omeprazole. I really wish I'd had my levels checked before the loading dose because it might have been easier to get taken seriously with a lower reading. By coincidence my mother had b12 deficiency. My doctor assures me it's not hereditary, though I'm starting to lose faith in the medical profession as it seems likely they poisoned my nerves in the first place.

Your doctor is wrong, my mother has it, I have it, my oldest son and my youngest son all have pernicious anemia. My levels taught my sons not to mess with it because mine went to "no detectable" So as soon as they began to get symptoms, they had the blood tests done.

God, you must have felt rough! Your sons were lucky because like me they knew what to look out for. My mother had it and so by coincidence does my husband. Otherwise I'd have accepted my gp saying my deficiency wasn't significant.

Pernicious Anaemia , an autoimmune condition can DEFINITELY be genetic . Not necessarily from a mother or a father , but genes can hop generations as we know . Maybe you have P. A. It’s quite difficult to diagnose in some people as when tested for it (Intrinsic Factor antibody test ) people can have a negative test when they actually do have the condition . I have lost faith in the medical profession too , since my encounter with P.A. But Omeprazole and other PPIs are causing terrible health problems . We need plenty of stomach acid to help us absorb our food . We produce less as we get older. When this happens , the sphincter that closes when it detects acid, doesn’t close as tightly as it should , and allows some acid to escape, causing “heartburn” / acid reflux .Although this acid isn’t as concentrated as it should be , it still burns the oesophagus, so antacids and PPIs are prescribed . These medicines make the pharmaceutical industry billions. Low acid stomach need plenty of cid to make the oesophageal sphincter work properly . Some people with low stomach acid ,take acidic drinks for this, or even betaine hydrochloric capsules with pepsin . Also good for the tummy are probiotic foods , or failing that , probiotic preparations like capsules etc., Our stomach health is very very important to our whole health . I’m getting boring now ! I’ll go !!

Are you calling me a "pundit" beginner1? Or am I just a "sage" that knows his onions as I'm often being told to "get stuffed"

Seriously though "Laughter is the best medicine" and "It's being so cheerful as keeps me going" – said by Mona Lott, a depressed laundrywoman in ITMA - a steam radio programme from the 1930s/40s which I listened to whilst growing up as a boy in Birmingham where "punning" comes as a second nature.

If you want to consider sel-injection , you can get the information here . It’s cheap if you are able to buy in bulk. ( about £1.00;a shot including everything ) Perhaps you can get you GP to give a prescription for the Hydroxocobalamin ampoules if he/she will not give you shots , , otherwise the only way to get them is from an online German pharmacy . Anything injectable can only be obtained on prescription in U.K. In many other countries the B12 ampoules are obtainable over the counter. It’s horrible to have numb feet . There is also the danger with them of tripping and falling. Needles , syringes etc are obtainable in U.K. . Give it some thought .

Unless I can get rid if the tremor, I think self injecting is out. Never mind being a real sissy! My hope is that if my b12 problem was drug induced and I get treated now, I may not need maintenance doses in the future.

Thanks, I have worked out how to translate the page & sorted now (not v technically minded lol!) I've ordered - feel so relieved to have seen all this, I was actually searching for a clinic to get private injections & they are so expensive! You are a star for posting all the info and advice, I wouldn't have had a clue but the needles were easy to find on Amazon so fingers crossed. Take care xx

In UK, people with b12 deficiency with neuro symptoms are supposed to have more intensive treatment. See BNF link and BSH Cobalamin and Folate Guidelines link for more details. BSH Cobalamin and Folate Guidelines and BMJ B12 article emphasise that people symptomatic for b12 deficiency should be treated with B12, even if B12 is within normal range.

Untreated or under treated b12 deficinecy can lead to further deterioration including spinal problems.

Lots to mull over there, thank-you very much. Just a thought, my immunoglobulin a is below range, do you know what that means? Thyroid tests OK, but not sure what else I've been tested for. I assume if I had macrocytosis it would have been picked up on.

These good people have already covered most of it. The repair of neurological damage is excruciatingly slow. Start a log book and assess your own severity score for each symptom on a daily basis. Monitor your changes and look for improvements over months and years.

Gentle range of motion exercises are needed to stimulate muscles and nerve repair. Do you swim?

How do you feel about self injections? There are quite a few good YouTube videos on self injecting.

A level of 174 is definitely low enough to have symptoms. I began treatment when my level was 176, and I had lots of symptoms. Numbness, aches and pains, forgetfulness, confusion, difficulty with balance, to name but a few. If you felt better with the injections your GP should be taking that into account.

Only about 20% of the B12 in our blood stream actually reaches our cells. So when you look at that figure of 174, it really isn’t that high.

Are you vegan or vegetarian? In that case you could try taking supplements to boost your levels.

Many other countries treat anything below 500 as a deficiency. My own GP treated anything below 200 if the patient was symptomatic.

He might have been but I saw a neurologist this evening and he says that my tremor is a cranial tremor not to be confused with the sort of uncontrolled movement you'd get if it was caused by nerve damage from b12. He said it was unlikely that b12 deficiency alone when my level was 174 would entirely account for the nerve damage. Apparently b12 every other day is only for people with severe neurological problems, if you were bed ridden for example. He says that now I've had my loading dose, the guidelines say I will need an injection every two months. He will write to my gp and recommend it and that is what I will get.

Just read that back, what a grumpy post! Thank-you so much for taking an interest. I do know that plenty of people out there live with far worse than numb hands and feet. I'm just going to have to face up to it.

It’s great that you’re getting the help and advice you need. Two monthly injections are good. I hope you will find that the numbness lessens over time. Mine certainly has, and only seems to get bad again if I’m late for my injection or if I’ve been overdoing things.

If the doctor says that it is not B12 deficiency then they need to find out what it is. Demand to have nerve conduction tests, electromyography, MRI, possibly a nerve biopsy test (although I wouldn't recommend that one), tests for all the vitamins that can cause neuropathy if there's not enough (or too much of them), coeliacs disease (although that can't cause you neuropathy, your doctor probably won't know that) and anything else else that might apply.

Or they can start you in a course of B12 injections as recommended by the BNF. They might decide that it might be the easiest (and cheapest) way to get rid of you.

Get sublingual 5000mg, under the tongue, just to be sure you are keeping B12 up. It is possible if your numbness is from B12 deficiency, Nerves that are damaged can heal slowly, nerves that have totally died will probably not recover. Just make sure B12 is not the reason you don't improve. Take it. You can get sublingual over the counter in America, don't know about other countries. Seems to me a lot of countries with socialized medicine will not treat PA the way it should be.

I found that I needed to prove the B12 deficiency. Or rather why. I have the auto immune PA - no intrinsic factor and high parietal cell antibodies. Pretend to focus less on the B12 injections or tablets and more on why and the doctors will be more helpful. Also remember that you can trust your gut and find a good doc. I'm not sure what country you're in but here in Australia you can legally request a copy of your test results. I do each time and a have a file I take with me to every single appointment. Good luck!

Thanks for the advice, doctors by and large are a haughty lot. The best way to handle them is to massage their egos and revere their knowledge but take nothing they say as gospel. Too harsh? Maybe I've just met the wrong doctors.

So happy I found this thread! I thought I was going mad - tingling and numbness and other symptoms - my GP practically accused me of being an alcoholic due to the size of red blood cells - finally got diagnosed with a hereditary neurological disorder which causes demylination of the nerves and am B12 and folate deficient.

They will still only let me have an injection every 3 months though - it lasts a week tops and then I'm floored again. Injecting myself doesn't worry me so am going to have a look at the german site & hopefully get sorted

I have those symptoms too and have been diagnosed (via genetic blood test and nerve conduction studies - look up hereditary neuropathy with liability to pressure palsies (HNPP) - there's a couple of good facebook groups for advice but def worth checking out. I also had lanzoprazole for years and am B12 and folate deficient. Good luck x

Hi Ribblevalley girl, Good luck with it all. I've managed to score two weeks of injections privately to tide me over until I've seen a neurologist. Hurts like hell though, the loading dose jabs from the gp were very quick and relatively painless, these are neither. The consensus seems to be that if there are neurological issues injections are required every other day.